What Makes it Hard

I’ve written before about how raising a child with Down syndrome doesn’t require strength, it requires stamina.

There are things about our life that are a challenge.

Now, a lot of people would follow that up with “but everyone has challenges so it’s all ok!!!” There is a tendency to soften the blow, to fear sharing these challenges.

I’m not going to do that today. Today, I’m going to tell you about something that is a challenge and I’m not going to sugar coat it. I’m not even going to finish with a cute Rowenna anecdote, or a picture of my sweet girl.

Rowenna has (had) a cardiologist who we used to see on a biweekly basis, then every few months, and now every year. We did not choose him. Our insurance has just one pediatric cardiologist and when she was born we were not in the financial position to choose an out of network provider.

We immediately found him to be a bit of a know-it-all, but at the height of our grief and exhaustion and confusion over what we were going through, we carried on. Doctors can tend toward overconfidence, and some lack a bedside manner, and since he was our only choice…well, he was our only choice.

Once the fog cleared a bit and we knew enough about her heart condition and Down syndrome to start asking questions, we were concerned by the things he had to say. He is competent when it comes to the heart, its structure, its function. He is very good at explaining a complex diagnosis and provides excellent resources. However, if hubby was at an appointment with us, the doctor would all but refuse to speak to me. If I was there alone, it was just the facts. He is nearly impossible to reach by phone and takes a staggering amount of vacation time. (Hey, do what you gotta do, I don’t begrudge a man a vacation…but when your own child is in heart failure, it’s more than frustrating to not be able to get a hold of your cardiologist for a week at a time.)

But above all, he lacks, completely, the ability to recognize the possibilities in a person with Down syndrome.

With every visit, we had a doctor sitting across a desk from us, nodding wisely, dispensing sage “advice” about the abilities of people with Down syndrome. He does it in such a way that you almost agree, and I would often leave these appointments wondering if my expectations were too high, my dreams too big. After all, he has met many more people with Down syndrome than I will likely ever meet, and he has spent time with them across their childhoods (and in some cases, into adulthood).

At our most recent visit, and what is now our last visit, he took a step too far. He went through some standard questions. He asked if she was speaking, and I told him the truth – that she uses a combination of spoken words, signs, and gestures to communicate. He clarified that he meant “actual” words. I mentioned that she now consistently asks to have her diaper changed (with incredible accuracy – she does not ask for a dry diaper to be changed) and is showing an interest in using the toilet. He told us not to “bother” with potty training until we “have to” to get her into school (at age 5).

These things may seem small, but in the context of a history of comments like this at every appointment, it was starting to get uncomfortable.

Then came the straw that broke the camel’s back. Rowenna had a very difficult time with the EKG. For those who have not experienced or watched an EKG, it involves sticking a series of pads on the chest and then connecting cables to these pads. It is typically pain-free and relatively quick. Once all the cables are connected, it’s a matter of seconds before the test is over and everything is removed.

Well, Rowenna is 2.5 and has the attitude of a 2.5 year old. (read: mercurial) She had a sinus infection, was not feeling too good, and was off her schedule because of the appointment. Usually she is pretty flexible, but if she misses her usual nap when she is sick, woe to the person who gets in her way. The doctor also had us come 45 minutes early to get an xray (which took less than 5 minutes), then was running behind, so we ended up in the waiting room for over an hour before we were finally brought back to the examination room. Needless to say, she was not in top form.

We’ve tried to make doctor appointments as comfortable as possible for her. We make sure she is well fed and hydrated, has a favorite toy or two, and we sing lots of songs. For whatever reason (could be that she’s tired of being at the doctor, didn’t feel good, was being 2.5, or all or none of the above), she just didn’t want to lay down for the EKG. She lost it. Completely lost it. Longest 5 minutes we’ve had in a long time.

The doctor mentioned he would like to do one at our next appointment in two years and that we could let her sit up next time so she doesn’t freak out. I said that maybe next time it might be smoother because we could better help Rowenna understand she was safe and wouldn’t be in pain. After all, she would be 5. Sure, there could still be a power struggle, but I was expressing that I felt she and I could have more communication in two years than we do now.

He told us, in no uncertain terms, that you just can’t reason with a person with Down syndrome. I fixed him with my best “did you mean to say that out loud?” stare, and he back peddled a bit. He added that sometimes you can, when they are much older, but “even then” it is hard.

All of a sudden everything came into such crisp focus I nearly toppled out of my chair. Aha! This guy doesn’t think my kid can do anything. All the “wisdom” he ever shared about Down syndrome suddenly made sense. Of course we shouldn’t try to potty train – it would be futile because she isn’t capable. We shouldn’t worry about preschool or reading or writing or her future because she isn’t capable. He uses some arbitrary standard where the spoken and signed words of a toddler aren’t “actual” words.

We wrapped up that appointment very quickly. We left and sat in the car. Hubby looked at me, in that way he does when he knows I am fuming inside but trying to maintain composure, and asked me if the doctor said what he thought he heard. We decided we would no longer see this doctor and instead take the time to find someone who thinks our child is capable.

For those wondering why I chose to say nothing to this doctor, it came down to two factors. One, I was steaming mad and when I am that mad I have a very difficult time making a concise statement. I tend to say all that I want to say, and not just what I need to say. Two, this doctor is staggeringly arrogant. It’s been my personal experience in working with people this arrogant that you’re more likely to get a smirk than an apology and the most effective thing to do is let someone in charge know what happened. So, I will be writing a letter.

This is a person who is supposed to be an expert. This is a person who contributes to my understanding of Down syndrome. This is a person who has spent time with people with Down syndrome – how can he be so wrong about it? How can he spend so much time mending their hearts but yet so completely blind to who they are?

This is what makes this life so hard sometimes. It’s people who are supposed to be experts, people who teach others about your child’s diagnosis, people who literally hold your child’s life in their hands…and they’re wrong. They are flat out wrong about your child, and yet take every opportunity to explain to you why you are wrong. The one who sings with this child, reads to this child, feeds this child, changes diapers, snuggles her to sleep. You know nothing. You are wrong because you have the audacity to believe in your child.

This is a person who is in the business of caring for people. Well, I guess that is better stated: in the business of caring for bodies. Yet doctors are considered experts and are given the benefit of the doubt. A mom trumpets her pride to the world, and she’s unrealistic and out of touch. A doctor places limits on individuals, doesn’t listen, doesn’t try to understand – and he’s listened to, heard, and we nod, wise to agree with him.

Rowenna’s diagnosis is not the challenge. It’s the attitudes of other people. The limitations they put on her at the mere sight of the slant of her eyes, or the words “Down syndrome” on her chart. The constant decision making, deciding whether to say something, to let it go, or to write a letter later on is a challenge. Never knowing if you’ve taken the right action. Feeling like you should have said more, gotten angrier or more insistent. Wondering if you should have done something more so it is easier for the next person to come along. It’s a challenge.

One I can rise to, without doubt, but it’s a challenge none the less.

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12 responses to this post.

  1. Thank you for your honesty. This is so spot on. Thankfully, Kamdyn’s doctors right now are all good ones. We saw a geneticist when she was a baby that was terrible. Our biggest challenge with doctors has been getting them to not write off every health issue as just being common for kids with ds and ignoring it. We’re finally getting some place now. Kamdyn was the same way about the EKG, and she wouldn’t let them do an echo. We still go every 6 months, and they said we try again next time.

    Reply

  2. *This* right here is why I blog about Down syndrome. The only reason. *This* is the reason it is sometimes tougher to raise a child with Down syndrome. *This* is the only reason I would imagine for that 1% of people who have Down syndrome to not be happy with their lives.
    Other people. Stings and burns all the more when it’s someone in a position like his.

    Reply

  3. Posted by Clare Hitchens on February 9, 2013 at 9:37 am

    Thank you for this post. I wish your doctor would meet some adults with Down syndrome who are leading fulfilled lives. My son is 19 and takes the city bus daily to and from his downtown job in a cafe/kitchen, sometimes dropping into the community centre first for volleyball or basketball with a bunch of downtown business workers. When he was your daughter’s age I too had those days where I doubted my belief in him because of the things someone (usually in the medical profession) said to me. Stay true to what you believe. I wish you strength and I wish you luck finding a doctor who will be a good fit for your family.

    Reply

  4. “Those” people are everywhere in our lives. Our doctors. Our educators. Our friends. And, hardest of all, our families.

    Reply

  5. If you think you can manage it, Little Man’s cardiologist at UW-Madison was fabulous (but Little Man doesn’t have Downs)…she actually called us after his last appointment (before we moved) to let us know the results of his echo and EKG. This was at 7pm. I don’t know any doctor that stays late to call patients with test results, even when they’re fine.

    If you’re interested, I can give you her name.

    Reply

  6. So infuriating! This is so well written Melissa. Incredible post. And good for you for deciding to find another doctor. We shouldn’t have to fight so hard to have our children to be recognized as real people with real gifts and capabilities. So glad you’ll be writing a letter. Maybe if he gets enough of them it’ll make him think. But you are right. It’s impossible to reason with arrogance. Now that’s a statement

    Reply

  7. I love you!

    Reply

  8. Posted by D Brown on February 9, 2013 at 11:28 am

    Well said! Awesome post and I can relate to the incident. Our 3 year old also has Down Syndrome. He is only limited by the limitations others place upon him.

    Reply

  9. Great post! I think you should definately write the doctor a letter, maybe even send him a copy of your post. He may be a good person but just ignorant. I too get very frustrated because I realize that no matter how much research, how much training, how much good intentions our doctors and therapists for Noah (6-DS) are, they could be wrong. But at the end of the day, they go home and their life goes on as usual, whether they are right or wrong. It’s Noah and us that wind up living with the consequences of a missed diagnosis, an ineffective therapy, etc.

    Reply

  10. This:

    “Rowenna’s diagnosis is not the challenge. It’s the attitudes of other people. The limitations they put on her at the mere sight of the slant of her eyes, or the words “Down syndrome” on her chart. The constant decision making, deciding whether to say something, to let it go, or to write a letter later on is a challenge. Never knowing if you’ve taken the right action. Feeling like you should have said more, gotten angrier or more insistent. Wondering if you should have done something more so it is easier for the next person to come along. It’s a challenge.
    One I can rise to, without doubt, but it’s a challenge none the less.”

    Exactly.

    Reply

  11. Completely agree with Lisa above. Your last paragraph is spot on. Exactly right. Very well said, very well written. Thank you for this post and for standing up for Ro and all of our kids.

    Reply

  12. I completely agree also about the part of raising a child with Down syndrome that is challenging is dealing with the attitudes of others. If all that were involved were just loving and caring for and believing in our own children, it would be cake. The energy it takes to get others on that bus is often exhausting.

    Reply

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